Once I got home from the hospital, I spent most of my time laying on the couch or in bed. I went home with no food restrictions, but was still pretty nauseous from all the opiates. And I'm back on the twice-a-day blood thinner injections, which still hurt like the dickens. My sister had the week of Thanksgiving off, so she hung out with Greg and me one the couch that week. And we even managed to do something vaguely resembling Thanksgiving, with turkey and ham, green bean casserole, mashed potatoes, stuffing and gravy. My wonderful sister and husband did all the cooking, while I was a blob.
We spent a lot of time watching all six Star Wars movies in order, so that was fun. It had been far too long since I'd seen many of them. I needed significant amounts of help to get up and down the stairs, and out of bed or up off the couch, but both Greg and my sister were great helpers. They made me do laps around the house to get me moving, since even three laps from the living room through the kitchen and dining room and back were enough to wear me out (so going outside was not really an option). But by post-op week 2, I was able to go up and down the stairs by myself, though very slowly.
Today is post-op week 3 and my mobility is definitely better. I can walk short distances (like 1 block) without too much pain, and am nearly off all of the narcotic pain meds, though I'm nowhere near being ready to be off the ibuprophen and acetaminophen. I'm still terribly, terribly tired all the time and my brain still feels foggy (which I thought was due to the opiates, but maybe wasn't). It is still very painful to go to the bathroom, however. Like, I have tears streaming down my face and often feel like I'm going to pass out from the pain painful. But I have my post-op visit tomorrow with my surgeon and my oncologist, so hopefully they'll have some suggestions. I still think it's better than a colostomy, since the pain is relatively short-lived and infrequent. But if it's really going to be a permanent feature of my life from here on out... I honestly don't know.
The other weird thing that I've had to adjust to is it feels like all of my nerves have gotten jumbled. I can't consciously decide to go pee, for example. Whatever nerve signal used to do that is now gone. So now I have to just sit on the toilet and think very hard about running water and eventually my body figures it out. But it's a very different experience than peeing before surgery. And pooing is much the same; my body goes into these involuntary spasms that are horribly painful and I cannot control in an attempt to rid itself of waste. It works, and I'm very grateful that despite all of that I'm not incontinent, but it is weird, and disconcerting. And for the first time in my life I have pain that I absolutely cannot localize. It is a totally new and unpleasant kind of pain, that emanates roughly from my pelvis, but I am completely unable to pinpoint more exactly than that (and believe me, I've spent lots of time and energy trying and failing to localize it more specifically). I have started calling it my "phantom colon pain," because that's about as accurate as anything else. It does feel like nothing in my pelvis is working the way it's supposed to, which is hard. But as I said before, I'm not incontinent, and I managed to escape without a colostomy, so really I should be quite grateful. Talk about things you take for granted, however.
So tomorrow we meet with my surgeon and my medical oncologist. I'll get my staples out, which will be exciting, and we'll get the pathology results back, which could be good or bad. The pathology will show exactly how many of my lymph nodes have cancer, how clean the margins around the tumor were, and how big my tumor was. This information is really what determines prognosis, as well as how much more chemo I'm going to need. So I'm understandably a little apprehensive about that. So much so, in fact, that I decided I didn't want to get the results over the phone, or in an office while Greg was out of town. So they've been back for about a week, and my oncologists have seen them already. But at least this way, I won't get bad news at a time when I'm unprepared to deal with it. The visit tomorrow will also determine when I get my new port, because I need to start chemo again Jan 2. And so then we get to start planning for that.
But at least the finish line is in sight now! Worst case (okay, not really worst case because worst case is we find mets in my lungs or something and I am deemed incurable, but worst case while remaining curable) I have another 6 months of chemo ahead of me. And I know I can do chemo. It's miserable and it sucks, but it's only 4 days of miserable suckiness at a time. I'm not looking forward to the cold-sensitivity and neuropathy this go-round, since it will be very cold here in January. But we'll get through it, like everything else. And at least it does feel like most of the scary unknown unknowns have been dealt with at this point (at least until I need to have follow-up scans and have to deal with the possibility of recurrence, which is nearly uniformly fatal within 2-5 years).
Tuesday, December 6, 2011
Surgery recap
So surgery went pretty well. They took out over a third of my colon, about half my rectum, several pounds of lymph/soft tissue, my uterus and my cervix. Apparently the surgeon couldn't get my descending colon to reattach to what was left of my rectum, so she had to remove the whole descending piece and reattach the transverse colon. So, as I understand it, my colon now goes up and then comes right back down again in an inverted V-shape, rather than up and over and then down like everyone else's.
I don't remember much of the first few days in the hospital, because I was on very heavy drugs. I do remember being terribly itchy from the dilaudid in my epidural, so they took the dilaudid out and gave me a morphine pump. Very early every morning the team with all the students would come by and spend maybe 2 min talking about me, rarely to me. There was a very nice doctor on the pain team who would stop by later in the morning - I really liked her and she seemed to be actually invested in me unlike the attending and the residents. Mostly I slept a lot. My mom was there most of the time to keep me company, which was great. And Greg was there a lot of the time as well. It was so much easier being in the hospital with folks to talk to. Whenever I was awake and no one was around it was very lonely. We went ahead and sprung for nice Bose noise-cancelling headphones, and they were SOO worth it. I could listen to music or watch hulu on my ipad without having to deal with all of the ambient noise of the hospital. I found them even easier to fall asleep with than my regular earplugs (because my regular earplugs amplify my heartbeat and breathing sounds so much). I got lots of IV benadryl for the itching, so I didn't have trouble sleeping most of the time.
The nurses were great, but I do wish there was more continuity. I think I had the same day nurse once and the same night nurse twice, but other than that it was a new nurse every day and every evening, which was a little confusing. It seemed unnecessary as well, as often I would see the nurse I'd had the day before on the floor but assigned to a different patient.
Measuring urine output was a big deal in the hospital. For the first few days when I had a catheter (because I couldn't get up to go to the bathroom) it was fairly unobtrusive, they'd just check how much urine was in my lovely catheter bag and write it down. After I got the catheter out, on day 3 I believe, then whenever I wanted to go to the bathroom, I'd have to alert my nurse to put my "hat" in the toilet (the "hat" was a white plastic thing that looked like an inverted top hat with measuring lines in it), and then alert them again when I was done so that they could measure and empty it. Initially, this was not a big deal at all because I couldn't get out of bed or move 10 ft without assistance, so I'd have to page the nurse anyhow. Towards the end, however, when I was more mobile, it was quite a drag to have to page the nurse and wait for her to show up and whatnot. Also, I have never had so many people interested in my farts before! Apparently passing gas is a big milestone after bowel surgery, so every day at least six or seven people would ask me if I had passed any gas. When I finally did, my nurse literally applauded.
The first evening after surgery, I had a really rough time. I had been NPO since midnight the night before (no food or liquids) and was still not allowed to eat or drink anything, even tiny sips of water. Unfortunately, when they intubated me for the general anesthesia, they nicked my uvula (the tiny flap of flesh that hangs down in the back of your throat), so it was elongated and swollen and was resting on the back of my throat. This was causing me to gag repeatedly (basically any time I tried to talk, swallow or breathe through my mouth I would gag), which was extremely painful because I was contracting my abdominal muscles every time I gagged. Eventually, it got so bad that I was sobbing and hyperventilating and barely able to ask for something to numb my throat. So many doctors were called in, everyone was freaking out; they even brought in a crash cart. All I remember is getting hysterical that no one would get me some chloraseptic to numb my throat so that I could swallow without causing myself excruciating pain due to gagging. Eventually they figured it out and I got my chloraseptic and sure enough, I was fine afterwards, but it was apparently VERY scary for poor Greg and my mom. The only liquid I was allowed were these sponge swabs that could get dipped in water and then run over my tongue and gums to try and keep them moist. There was never enough liquid to swallow, which only made the gagging that much worse. I believe I wasn't allowed to actually drink liquids until day 3, but that first glass of apple juice was just about the tastiest thing I had ever consumed.
For several days I was on clear liquids only. So all meals consisted of broth, juice, jello and frozen lemon ice. After I finally passed gas, I was allowed to start on solid food, around day 5. The hospital has a rather insane menu of things to choose from and it's like room service: they deliver it right to your room. Unfortunately, everything I tried from their seemingly huge menu was rather terrible. I know they always say hospital food is terrible, but they had such diverse options I couldn't believe it would all be bad, but it was. By the last day, there was nothing on the menu that sounded in any way appealing, but they wouldn't discharge me until I ate something. Thankfully Greg's dad volunteered to go get me a sandwich from Au Bon Pain nearby, so that I could have something appetizing to eat to satisfy my keepers that I could go home.
The transition off of the morphine pump and on to oral painkillers was the other horrible piece. When I had my clot, my doctors initially treated the pain with more and more oxycodone, until I was taking 20-25mg/dose and at that level it lead to projectile vomiting. When they announced that they were going to transition me to oxycodone, I explained that a month ago I had been on oxycodone and it hadn't gone well, so they eventually had to switch me to MS Contin (continuous release morphine sulfate). But it didn't matter - they were going to start me at 5mg of oxycodone and see how I did. Unfortunately, the 5 mg of oxycodone was completely insufficient to tackle my pain, as was 10mg, 15mg, and 20mg. The nurse finally got approval to go up to 25mg in the middle of the night, and then I promptly threw up maybe 10 min after getting my meds. Let me just say that throwing up after major abdominal surgery is perhaps the most painful and horrible thing you can imagine. Throwing up is miserable regardless, but then the overwhelming pain from my incision made me even more nauseous than I'd been before, creating a vicious cycle that lasted for what seemed like forever. But because the nurse didn't see the oxycodone pills in my vomit, she couldn't give me any more drugs for several hours (because the oxycodone may have been absorbed). That was definitely the low point of the entire experience. And crying hurt like hell, but I couldn't stop myself, so I was just a crying, screaming, vomiting mess that night. Eventually, they were able to give me some more benadryl and put me back on the IV morphine so that I could get some sleep (it was probably 4 in the morning by this point).
The next morning, when the team came through, I explained again about my previous experiences with oxycodone and how well MS Contin had worked for me, but they insisted on putting me on oral dilaudid first. And the oral dilaudid knocked me out so I basically don't remember that day at all. And I'm missing something, because that night I threw up again, and finally insisted on MS Contin, but the resident wouldn't give it to me because I was in "acute pain" and MS Contin was a long-acting drug (each dose lasts 12 hrs). The argument that a) I've tried everything else they wanted to throw at me and have thrown it back up, b) MS Contin has been proven to work for me, and c) there was a 0.0005% chance I wouldn't be in pain in 12 hrs had no sway with this resident in the middle of the night. I'm sure I was very nasty to him, but I still don't understand why someone couldn't have made that happen for me. But I did convince him that morphine was the way to go, so then I got MS IR (instant release morphine sulfate), which is basically the same thing as MS Contin but with a shorter half-life. But spending two nights throwing up because the powers that be felt like I should go through their standard procedure was exceptionally frustrating.
Can you tell my memories of this time are all jumbled? They don't go in chronological order at all. So I apologize for the jumbled nature of all of this.
I don't remember much of the first few days in the hospital, because I was on very heavy drugs. I do remember being terribly itchy from the dilaudid in my epidural, so they took the dilaudid out and gave me a morphine pump. Very early every morning the team with all the students would come by and spend maybe 2 min talking about me, rarely to me. There was a very nice doctor on the pain team who would stop by later in the morning - I really liked her and she seemed to be actually invested in me unlike the attending and the residents. Mostly I slept a lot. My mom was there most of the time to keep me company, which was great. And Greg was there a lot of the time as well. It was so much easier being in the hospital with folks to talk to. Whenever I was awake and no one was around it was very lonely. We went ahead and sprung for nice Bose noise-cancelling headphones, and they were SOO worth it. I could listen to music or watch hulu on my ipad without having to deal with all of the ambient noise of the hospital. I found them even easier to fall asleep with than my regular earplugs (because my regular earplugs amplify my heartbeat and breathing sounds so much). I got lots of IV benadryl for the itching, so I didn't have trouble sleeping most of the time.
The nurses were great, but I do wish there was more continuity. I think I had the same day nurse once and the same night nurse twice, but other than that it was a new nurse every day and every evening, which was a little confusing. It seemed unnecessary as well, as often I would see the nurse I'd had the day before on the floor but assigned to a different patient.
Measuring urine output was a big deal in the hospital. For the first few days when I had a catheter (because I couldn't get up to go to the bathroom) it was fairly unobtrusive, they'd just check how much urine was in my lovely catheter bag and write it down. After I got the catheter out, on day 3 I believe, then whenever I wanted to go to the bathroom, I'd have to alert my nurse to put my "hat" in the toilet (the "hat" was a white plastic thing that looked like an inverted top hat with measuring lines in it), and then alert them again when I was done so that they could measure and empty it. Initially, this was not a big deal at all because I couldn't get out of bed or move 10 ft without assistance, so I'd have to page the nurse anyhow. Towards the end, however, when I was more mobile, it was quite a drag to have to page the nurse and wait for her to show up and whatnot. Also, I have never had so many people interested in my farts before! Apparently passing gas is a big milestone after bowel surgery, so every day at least six or seven people would ask me if I had passed any gas. When I finally did, my nurse literally applauded.
The first evening after surgery, I had a really rough time. I had been NPO since midnight the night before (no food or liquids) and was still not allowed to eat or drink anything, even tiny sips of water. Unfortunately, when they intubated me for the general anesthesia, they nicked my uvula (the tiny flap of flesh that hangs down in the back of your throat), so it was elongated and swollen and was resting on the back of my throat. This was causing me to gag repeatedly (basically any time I tried to talk, swallow or breathe through my mouth I would gag), which was extremely painful because I was contracting my abdominal muscles every time I gagged. Eventually, it got so bad that I was sobbing and hyperventilating and barely able to ask for something to numb my throat. So many doctors were called in, everyone was freaking out; they even brought in a crash cart. All I remember is getting hysterical that no one would get me some chloraseptic to numb my throat so that I could swallow without causing myself excruciating pain due to gagging. Eventually they figured it out and I got my chloraseptic and sure enough, I was fine afterwards, but it was apparently VERY scary for poor Greg and my mom. The only liquid I was allowed were these sponge swabs that could get dipped in water and then run over my tongue and gums to try and keep them moist. There was never enough liquid to swallow, which only made the gagging that much worse. I believe I wasn't allowed to actually drink liquids until day 3, but that first glass of apple juice was just about the tastiest thing I had ever consumed.
For several days I was on clear liquids only. So all meals consisted of broth, juice, jello and frozen lemon ice. After I finally passed gas, I was allowed to start on solid food, around day 5. The hospital has a rather insane menu of things to choose from and it's like room service: they deliver it right to your room. Unfortunately, everything I tried from their seemingly huge menu was rather terrible. I know they always say hospital food is terrible, but they had such diverse options I couldn't believe it would all be bad, but it was. By the last day, there was nothing on the menu that sounded in any way appealing, but they wouldn't discharge me until I ate something. Thankfully Greg's dad volunteered to go get me a sandwich from Au Bon Pain nearby, so that I could have something appetizing to eat to satisfy my keepers that I could go home.
The transition off of the morphine pump and on to oral painkillers was the other horrible piece. When I had my clot, my doctors initially treated the pain with more and more oxycodone, until I was taking 20-25mg/dose and at that level it lead to projectile vomiting. When they announced that they were going to transition me to oxycodone, I explained that a month ago I had been on oxycodone and it hadn't gone well, so they eventually had to switch me to MS Contin (continuous release morphine sulfate). But it didn't matter - they were going to start me at 5mg of oxycodone and see how I did. Unfortunately, the 5 mg of oxycodone was completely insufficient to tackle my pain, as was 10mg, 15mg, and 20mg. The nurse finally got approval to go up to 25mg in the middle of the night, and then I promptly threw up maybe 10 min after getting my meds. Let me just say that throwing up after major abdominal surgery is perhaps the most painful and horrible thing you can imagine. Throwing up is miserable regardless, but then the overwhelming pain from my incision made me even more nauseous than I'd been before, creating a vicious cycle that lasted for what seemed like forever. But because the nurse didn't see the oxycodone pills in my vomit, she couldn't give me any more drugs for several hours (because the oxycodone may have been absorbed). That was definitely the low point of the entire experience. And crying hurt like hell, but I couldn't stop myself, so I was just a crying, screaming, vomiting mess that night. Eventually, they were able to give me some more benadryl and put me back on the IV morphine so that I could get some sleep (it was probably 4 in the morning by this point).
The next morning, when the team came through, I explained again about my previous experiences with oxycodone and how well MS Contin had worked for me, but they insisted on putting me on oral dilaudid first. And the oral dilaudid knocked me out so I basically don't remember that day at all. And I'm missing something, because that night I threw up again, and finally insisted on MS Contin, but the resident wouldn't give it to me because I was in "acute pain" and MS Contin was a long-acting drug (each dose lasts 12 hrs). The argument that a) I've tried everything else they wanted to throw at me and have thrown it back up, b) MS Contin has been proven to work for me, and c) there was a 0.0005% chance I wouldn't be in pain in 12 hrs had no sway with this resident in the middle of the night. I'm sure I was very nasty to him, but I still don't understand why someone couldn't have made that happen for me. But I did convince him that morphine was the way to go, so then I got MS IR (instant release morphine sulfate), which is basically the same thing as MS Contin but with a shorter half-life. But spending two nights throwing up because the powers that be felt like I should go through their standard procedure was exceptionally frustrating.
Can you tell my memories of this time are all jumbled? They don't go in chronological order at all. So I apologize for the jumbled nature of all of this.
Monday, November 14, 2011
Surgery tomorrow
So tomorrow is surgery. We have to be there at 5:30am, and I go into the OR at 7:30am. You had better believe that I will be getting monster doses of medazalam as soon as they get that IV in me! Not that I'm a stranger to surgery, but this feels very different than all my prior minor surgeries, probably because I'm losing several feet of my colon/rectum, my uterus, and 4-6 lbs of lymph tissue.
But I'll have epidurals for the first 48 hours or so, followed by IV morphine, so hopefully I won't feel much for a while.
Today was spent mostly drinking a gallon of nuclear laxative and dealing with the effects of said gallon of nuclear laxative. I cannot believe that there is not a more pleasant way to accomplish the same effect, I mean seriously! I wish my training in any way equipped me to be able to work on a less awful solution. Because seriously, a full GALLON?! Of gunk that tastes roughly like rotten seawater, in which stinky socks have been stewing for several days. I started to gag on the third glass, and still had two thirds of a GALLON left to go. Man. But at least that's over with. Now it's just dealing with my brain that is desperately craving carbs (after a full day of nothing but clear liquids). As soon as I'm done loading my various electronic devices with sufficient amounts of entertainment material, I'm going to drug myself to sleep to avoid a) serious hunger pangs and b) ever-increasing levels of anxiety.
Greg will post something here tomorrow after I'm out of surgery to let folks know how it goes. He will also post something (perhaps the same thing) to Facebook.
I feel like I should say something profound, since there is still a small chance I won't make it out of surgery. But all I can think about are cookies. Lots and lots of cookies! So here's to no more periods ever! (I will not be sad to not have to think about that ever again.) And most importantly, NO MORE TUMOR!!!
Friday, November 11, 2011
Update from last week
I only just realized I never said anything about the scan last week. It was completely eclipsed by the news that they thought I might have HNPCC, so it fell by the wayside.
My scan was not great, but not terrible. There was a shadow that may or may not be tumor; the scan didn't provide enough information to tell. It looked almost identical to my scan after chemo, which is not great, but not terrible.
My initial scan was very clear that I had a giant tumor. After chemo, the tumor had melted to the point where there was just this shadow, in the same place as my tumor was, but there's no way to tell if that shadow was tumor or inflammation or something else entirely. And it looked the same after radiation. So that means that the tumor did not grow like crazy during radiation, which is good. But it didn't completely eliminate the shadow of maybe-tumor, so that's less good. Basically, we got zero information from the scan. And it didn't really provide any more information about the odds that I'd need a colostomy either. So it was a lot of anxiety for no information (which was sort of what I wanted anyhow, no information).
We'll know a LOT more once we get the pathology back after surgery, which usually takes around two weeks. Apparently my surgeon doesn't bother to cut out individual lymph nodes in cases like mine, since odds are reasonable that many are infected; she just cuts out the whole chunk of tissue and sends it to the path lab and they sort through the tissue to find all the lymph nodes and test each of them for cancer. Obviously, the fewer that come back positive, the better my prognosis will be. The best case would be if they got in there and there was no more evidence of tumor and all the lymph nodes came back clean. Realistically, this is highly unlikely. But a small tumor and no lymph nodes would be great! So we'll just have to wait and see. At least by that point the scary awful unknown-ness will be over and I'll just have the awful known-ness of chemo left.
We did decide to go ahead and do the hysterectomy, which resulted in no shortage of tears. It's odd how much it pains me to think about it, even though I know it will have very little impact on my life, given that the odds I will ever get pregnant are essentially zero. But it's still hard, and continues to be hard. Until we manage to have kids via a surrogate or adoption, I'm not sure it will ever stop being hard. I've teared up at more than one diaper commercial this week, and find pictures of babies even more sad than usual. But I also think once it's done and out of my hands (I could still conceivably change my mind at this point) it will get easier. In many respects, losing complete control of my life has been one of the hardest parts of this, but in other respects not having any choice in the matter can be a relief.
If I honestly sit down and think about it, I am absolutely terrified of surgery. I've spent this week frantically working to make sure that things are in place at work for me to be out for a long time, which has left me with little time to think about it. But it is truly, honestly, terrifying. (sigh) Again, though, with the lack of choice being a relief, I know that if I don't do this I will die soon with probability 1 (and yes, I realize that we all will die with probability 1), so even if surgery carries a 2.5% chance of death, that's still 97.5% better odds than no surgery. It's not like I really have any choice.
My scan was not great, but not terrible. There was a shadow that may or may not be tumor; the scan didn't provide enough information to tell. It looked almost identical to my scan after chemo, which is not great, but not terrible.
My initial scan was very clear that I had a giant tumor. After chemo, the tumor had melted to the point where there was just this shadow, in the same place as my tumor was, but there's no way to tell if that shadow was tumor or inflammation or something else entirely. And it looked the same after radiation. So that means that the tumor did not grow like crazy during radiation, which is good. But it didn't completely eliminate the shadow of maybe-tumor, so that's less good. Basically, we got zero information from the scan. And it didn't really provide any more information about the odds that I'd need a colostomy either. So it was a lot of anxiety for no information (which was sort of what I wanted anyhow, no information).
We'll know a LOT more once we get the pathology back after surgery, which usually takes around two weeks. Apparently my surgeon doesn't bother to cut out individual lymph nodes in cases like mine, since odds are reasonable that many are infected; she just cuts out the whole chunk of tissue and sends it to the path lab and they sort through the tissue to find all the lymph nodes and test each of them for cancer. Obviously, the fewer that come back positive, the better my prognosis will be. The best case would be if they got in there and there was no more evidence of tumor and all the lymph nodes came back clean. Realistically, this is highly unlikely. But a small tumor and no lymph nodes would be great! So we'll just have to wait and see. At least by that point the scary awful unknown-ness will be over and I'll just have the awful known-ness of chemo left.
We did decide to go ahead and do the hysterectomy, which resulted in no shortage of tears. It's odd how much it pains me to think about it, even though I know it will have very little impact on my life, given that the odds I will ever get pregnant are essentially zero. But it's still hard, and continues to be hard. Until we manage to have kids via a surrogate or adoption, I'm not sure it will ever stop being hard. I've teared up at more than one diaper commercial this week, and find pictures of babies even more sad than usual. But I also think once it's done and out of my hands (I could still conceivably change my mind at this point) it will get easier. In many respects, losing complete control of my life has been one of the hardest parts of this, but in other respects not having any choice in the matter can be a relief.
If I honestly sit down and think about it, I am absolutely terrified of surgery. I've spent this week frantically working to make sure that things are in place at work for me to be out for a long time, which has left me with little time to think about it. But it is truly, honestly, terrifying. (sigh) Again, though, with the lack of choice being a relief, I know that if I don't do this I will die soon with probability 1 (and yes, I realize that we all will die with probability 1), so even if surgery carries a 2.5% chance of death, that's still 97.5% better odds than no surgery. It's not like I really have any choice.
Friday, November 4, 2011
Monster mutations
So there are two main genetic mutations that cause colon cancer in extremely young people like me, FAP and HNPCC. FAP basically turns your colon into thousands of polyps, and since I only had two polyps (one which had turned into my giant tumor, and one that was tiny), we are confident I do not have FAP. HNPCC, on the other hand, is typically diagnosed from a family history of colon cancers or other abdominal cancers. My closest relative with colon cancer is my dad's cousin, who was diagnosed at over 60 (not indicative of HNPCC), and the only other abdominal cancer in my family is my maternal grandfather's pancreatic cancer. Also, HNPCC-related colon cancers nearly always occur in the ascending or transverse colon, and mine is low in the descending colon. So despite my desire for genetic testing, my medical oncologist said she felt confident enough that I didn't have HNPCC that we didn't need to test for it before surgery.
Very often, if you have HNPCC, they will surgically remove the entire colon, because the risk of recurrent colon cancer is so high. The second most common cancer associated with HNPCC is endometrial cancer, so they often do hysterectomies as well. Sometimes they also take out the bladder and as much of the soft tissue as they can, to remove everything that you can possibly live without that might become cancerous.
But my oncologist had convinced me that I didn't have it and so we didn't need to test for it. The genetic tests take about 6 weeks to come back. I am nearly always in favor of more information, but she has proven herself to be so extremely competent (see the incident with the clot) that I just trusted her.
The surgeon who did my ovarian transposition (the surgery to move my ovaries up out of my pelvis so they didn't get fried in the radiation) said that if I were his wife or daughter, he would want me to have a hysterectomy at the same time as my major surgery. The rationale for this was that there's an increased risk that I could develop secondary uterine cancers as a result of the pelvic radiation, including a nasty form of incurable sarcoma, and my uterus is useless for childbearing, so why not just take it out and remove that risk. Additionally, the recovery time from my surgery would be no greater with a hysterectomy than without, and performing a hysterectomy later, after my pelvis is full of scar tissue from this surgery, would be much more difficult and time-consuming (though not impossible). The first time I heard this argument, it made a lot of sense to me. I'm pretty deeply risk-averse, and I think cancer has only made me more so, so why keep my uterus around if it's not going to serve its intended purpose and makes it more likely I'll have to go through this nightmare of cancer treatment again.
But then I went back to my medical oncologist and she said, essentially, surgeons like to cut out organs, of course he wants to remove your uterus. And she emphasized that everything he said is 100% true, but that it is highly unorthodox to perform a prophylactic hysterectomy on a woman of my age. She said her job was to cure me of my colorectal cancer, while leaving me as intact and normal as possible, and removing my uterus wasn't necessary and why not leave me as whole as we can. During radiation, I asked my radiation oncologist what he thought about a prophylactic hysterectomy, and his response was that he has treated thousands of patients for colorectal cancer, several of them young women, and he doesn't know of a single patient who had a hysterectomy without any evidence of disease or metastasis. So after that, I was fairly convinced that it was unnecessary. I'd also done some reading, and there is a small but real chance of fairly severe sexual dysfunction in young women following hysterectomy, which I'd like to avoid if at all possible.
But then on Wednesday, my surgeon announced that she feels strongly that I should have a hysterectomy. And she had pulled my original tumor biopsies from MGH (Mass General Hospital) to have her pathologist stain them for some specific markers (MSI) that are indicative of HNPCC. Prior to that revelation, we were confident I did not have HNPCC. But apparently at some point a test had been run that showed that my tumor was APC-negative, which dramatically increases the chances that I have HNPCC. So much so that my medical oncologist now agrees with my surgeon that even if the marker tests come back negative, it is still a good idea for me to have a hysterectomy.
And apparently even if the MSI-marker tests come back negative there is still a very small chance I could have HNPCC. If they come back positive, it is highly likely that I have HNPCC.
So my medical oncologist set me up with a genetic counseling appointment this afternoon (in an hour, actually) and put a rush on the HNPCC test. So we might have that back in a week or two, rather than having to wait the normal 6 weeks. I suck at waiting.
So it's back to the hospital for me! Whee!! And hopefully we'll hear about the MSI-marker results soon. I don't want to have to continue to deal with this uncertainty through the weekend. But at this point, I guess it almost doesn't matter. Because the MSI-marker tests aren't conclusive in either direction. And both my surgeon and my medical oncologist agree that I should have the hysterectomy regardless of what the tests say. I still just suck at waiting.
And I thought the scan results were the only thing I had to be worried about. HA! Cancer: full of freaking scary unknown unknowns.
Very often, if you have HNPCC, they will surgically remove the entire colon, because the risk of recurrent colon cancer is so high. The second most common cancer associated with HNPCC is endometrial cancer, so they often do hysterectomies as well. Sometimes they also take out the bladder and as much of the soft tissue as they can, to remove everything that you can possibly live without that might become cancerous.
But my oncologist had convinced me that I didn't have it and so we didn't need to test for it. The genetic tests take about 6 weeks to come back. I am nearly always in favor of more information, but she has proven herself to be so extremely competent (see the incident with the clot) that I just trusted her.
The surgeon who did my ovarian transposition (the surgery to move my ovaries up out of my pelvis so they didn't get fried in the radiation) said that if I were his wife or daughter, he would want me to have a hysterectomy at the same time as my major surgery. The rationale for this was that there's an increased risk that I could develop secondary uterine cancers as a result of the pelvic radiation, including a nasty form of incurable sarcoma, and my uterus is useless for childbearing, so why not just take it out and remove that risk. Additionally, the recovery time from my surgery would be no greater with a hysterectomy than without, and performing a hysterectomy later, after my pelvis is full of scar tissue from this surgery, would be much more difficult and time-consuming (though not impossible). The first time I heard this argument, it made a lot of sense to me. I'm pretty deeply risk-averse, and I think cancer has only made me more so, so why keep my uterus around if it's not going to serve its intended purpose and makes it more likely I'll have to go through this nightmare of cancer treatment again.
But then I went back to my medical oncologist and she said, essentially, surgeons like to cut out organs, of course he wants to remove your uterus. And she emphasized that everything he said is 100% true, but that it is highly unorthodox to perform a prophylactic hysterectomy on a woman of my age. She said her job was to cure me of my colorectal cancer, while leaving me as intact and normal as possible, and removing my uterus wasn't necessary and why not leave me as whole as we can. During radiation, I asked my radiation oncologist what he thought about a prophylactic hysterectomy, and his response was that he has treated thousands of patients for colorectal cancer, several of them young women, and he doesn't know of a single patient who had a hysterectomy without any evidence of disease or metastasis. So after that, I was fairly convinced that it was unnecessary. I'd also done some reading, and there is a small but real chance of fairly severe sexual dysfunction in young women following hysterectomy, which I'd like to avoid if at all possible.
But then on Wednesday, my surgeon announced that she feels strongly that I should have a hysterectomy. And she had pulled my original tumor biopsies from MGH (Mass General Hospital) to have her pathologist stain them for some specific markers (MSI) that are indicative of HNPCC. Prior to that revelation, we were confident I did not have HNPCC. But apparently at some point a test had been run that showed that my tumor was APC-negative, which dramatically increases the chances that I have HNPCC. So much so that my medical oncologist now agrees with my surgeon that even if the marker tests come back negative, it is still a good idea for me to have a hysterectomy.
And apparently even if the MSI-marker tests come back negative there is still a very small chance I could have HNPCC. If they come back positive, it is highly likely that I have HNPCC.
So my medical oncologist set me up with a genetic counseling appointment this afternoon (in an hour, actually) and put a rush on the HNPCC test. So we might have that back in a week or two, rather than having to wait the normal 6 weeks. I suck at waiting.
So it's back to the hospital for me! Whee!! And hopefully we'll hear about the MSI-marker results soon. I don't want to have to continue to deal with this uncertainty through the weekend. But at this point, I guess it almost doesn't matter. Because the MSI-marker tests aren't conclusive in either direction. And both my surgeon and my medical oncologist agree that I should have the hysterectomy regardless of what the tests say. I still just suck at waiting.
And I thought the scan results were the only thing I had to be worried about. HA! Cancer: full of freaking scary unknown unknowns.
Tuesday, November 1, 2011
Rollercoasters and roosters
So I feel a little like my life is a rollercoaster these days. When I'm feeling good, I feel very nearly healthy and thus great, but then inevitably the fatigue/nausea/anxiety catches up to me and I crater. It's so nice to have the good moments, though, that I'll take any/all of the craters just to be able to feel normal for a little bit.
Tomorrow I go in for a full day of appointments. I have a scan at 6:30am, then I meet with the surgeon to get the results of that scan at 9, followed by my pre-op anesthesia consult, and meeting with the ostomy team. I am NOT looking forward to it, mostly because everything that reminds me of surgery these days induces rather extreme anxiety. And while the prospect of getting good prognostic news from the scan is great, the fear of getting bad news totally outweighs the good. I have spent nearly all my life in search of data and information, and here for one of the first times I can remember, I think I'd really rather not know.
The main purpose of the scan is to give the surgeon a better sense of the odds that I will need a temporary colostomy, so that she can plan accordingly. Even if the scan looks great, it's still not going to be 100% that I won't need one, as there are apparently some issues that could pop up once she gets in there that would require a colostomy. But she said that if she doesn't have to do one, she won't, which is great news. But because there's still a chance I'll need one, I still have to meet with the ostomy team to go over where they're going to put it and caring for it and everything else. And, in the process of looking at the tumor to determine if I need a colostomy, we will also get my cancer restaged. And from everything I've read, stage at surgery is the single greatest predictive factor of survival. So if it's not good news it will be very hard.
The hospital also requires that I fill out advance directives/living wills/will wills before surgery, to make things easier on them in the event that I become incapacitated or die. While my surgery is long and complex (removing a large chunk of one's colon and rectum while allowing it to still function is not easy), it was not considered a risky surgery until I had my clot. Now, because of the clot, it is much higher risk, which makes me less than happy. But my surgeon hasn't ever lost a young patient on the table, so with any luck I won't be the first.
It's all just nerve-wracking. And to make things even more stressful, my husband is on the job market and has his first job talk on Monday! We fly out on Sunday morning (because with impending surgery/incapacitation, we'd rather be together than not, even for things like job talks), so he's terribly stressed about that aspect of his life, and about losing all day Wednesday to ferrying me around the hospital. As he likes to say, in any kind of normal world, going on the job market the first time should be the most stressful event in any young academic's life. Unfortunately, for us it's a distant second to my cancer treatment.
And the brakes on my husband's car went out on Friday in the midst of the big snow/ice storm, so we're still awaiting word from the mechanic on what the damage will be. Remarkably, they went out as he was stopped at a light, so he's fine, because with the roads covered in ice that could have been VERY bad. But it's an 11 yr old car, so if it's going to be a lot to fix, we might be in the market for a new car. Because that's not stressful either. So we're living in a state of basically constant stress and anxiety, which is less than fun.
But one week from today the first job talk and interviews will be done and we'll be on our way back to Boston, and two weeks from today, I'll be under anesthesia having my guts sliced and diced. So hopefully once we're through those two hurdles things will be less stressful. Though, to be fair, we were saying that as we were working 100+ hrs/week trying to work full time and finish the house in Michigan - once we sell the house and move, things will be less stressful. Oh how wrong we were!
Tomorrow I go in for a full day of appointments. I have a scan at 6:30am, then I meet with the surgeon to get the results of that scan at 9, followed by my pre-op anesthesia consult, and meeting with the ostomy team. I am NOT looking forward to it, mostly because everything that reminds me of surgery these days induces rather extreme anxiety. And while the prospect of getting good prognostic news from the scan is great, the fear of getting bad news totally outweighs the good. I have spent nearly all my life in search of data and information, and here for one of the first times I can remember, I think I'd really rather not know.
The main purpose of the scan is to give the surgeon a better sense of the odds that I will need a temporary colostomy, so that she can plan accordingly. Even if the scan looks great, it's still not going to be 100% that I won't need one, as there are apparently some issues that could pop up once she gets in there that would require a colostomy. But she said that if she doesn't have to do one, she won't, which is great news. But because there's still a chance I'll need one, I still have to meet with the ostomy team to go over where they're going to put it and caring for it and everything else. And, in the process of looking at the tumor to determine if I need a colostomy, we will also get my cancer restaged. And from everything I've read, stage at surgery is the single greatest predictive factor of survival. So if it's not good news it will be very hard.
The hospital also requires that I fill out advance directives/living wills/will wills before surgery, to make things easier on them in the event that I become incapacitated or die. While my surgery is long and complex (removing a large chunk of one's colon and rectum while allowing it to still function is not easy), it was not considered a risky surgery until I had my clot. Now, because of the clot, it is much higher risk, which makes me less than happy. But my surgeon hasn't ever lost a young patient on the table, so with any luck I won't be the first.
It's all just nerve-wracking. And to make things even more stressful, my husband is on the job market and has his first job talk on Monday! We fly out on Sunday morning (because with impending surgery/incapacitation, we'd rather be together than not, even for things like job talks), so he's terribly stressed about that aspect of his life, and about losing all day Wednesday to ferrying me around the hospital. As he likes to say, in any kind of normal world, going on the job market the first time should be the most stressful event in any young academic's life. Unfortunately, for us it's a distant second to my cancer treatment.
And the brakes on my husband's car went out on Friday in the midst of the big snow/ice storm, so we're still awaiting word from the mechanic on what the damage will be. Remarkably, they went out as he was stopped at a light, so he's fine, because with the roads covered in ice that could have been VERY bad. But it's an 11 yr old car, so if it's going to be a lot to fix, we might be in the market for a new car. Because that's not stressful either. So we're living in a state of basically constant stress and anxiety, which is less than fun.
But one week from today the first job talk and interviews will be done and we'll be on our way back to Boston, and two weeks from today, I'll be under anesthesia having my guts sliced and diced. So hopefully once we're through those two hurdles things will be less stressful. Though, to be fair, we were saying that as we were working 100+ hrs/week trying to work full time and finish the house in Michigan - once we sell the house and move, things will be less stressful. Oh how wrong we were!
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